User‐held information is where the ill person holds personal information about their care. Such records are becoming the norm in many settings and are becoming more popular with patients. This is especially the case where the person concerned is not in hospital and receives care from more than one professional. Providing people with information about their care is thought to increase their feelings of involvement in their treatment and aims to increase people’s satisfaction and participation with services, ensure early treatment and prevent hospital admission.
The value of user‐held personal information for those with severe mental illnesses is not known however and research evaluating the effectiveness is rare. Some research suggests that while many people decline the offer of a user‐held record, the majority of those who carry their records report this to be useful.
Based on a search in 2011, this review includes four trials with a total of 607 people and evaluates the effects of user‐held information for people with severe mental illness. In the main, the number of relevant studies is low, with poor reporting of some outcomes. Based on moderate quality evidence, the review found that user‐held information did not decrease hospital admissions, and did not decrease compulsory admissions or encourage people with severe mental illness to attend appointments (when compared to treatment as usual). Other important outcomes, such as satisfaction with care, costs and effect on mental health, were not available due to the limited quality of the four studies. There is therefore a gap in knowledge and evidence regarding user‐held information for people with severe mental health problems. Further evidence is also required on the different types of user‐held information (for example, if it involves the mental health team and what type of information is included in the record). Large‐scale, well‐conducted and well‐reported studies are required to assess the effects of user‐held information for people with mental illness. Two important randomised studies are currently taking place. For the present, despite a gap in evidence, user‐held information is low cost and acceptable to patients, so its use is likely to grow. However, it cannot be assumed that user‐held information is of benefit to people and is cost‐effective without further large‐scale, well‐conducted and well‐reported trials.